Prophylactic Mastectomy - Should I keep My Nipple?

So last week I went back to see my surgeon. We're really happy with the scarring and the overall shape I have with the expander in and Mr M says I'm ready to have the exchange surgery to switch from the hard bulky expander to an implant. At this point I raise the fact that I still want to go ahead with the prophylactic surgery on the 'healthy breast'. 

I can tell my my consultants face that he's against this and re-iterates the fact that it's not necessary. I explain that from Day 1, back in December when I got my diagnosis, I have always asked for them to take both breasts. It just isn't worth the risk for me. I have 2 children, I live for them, I'm not risking it. No way. Mr M says I will need to see the psychologist agan to get final approval. I explain I have already spent sometime with him and I know he will approve it.

Because I'm opting for the second mastectomy, the exchange surgery will need to wait. I now have a number of options to consider for the mastectomy surgery:

1. Lose the nipple
- this would mean I have to go through exactly the same process as before. When you have your nipple removed you have to have an expander to enable the skin to stretch. If I go ahead with this then I'll have mastectomy with expander,weekly fills up to 450cc as on the left side and then once complete and rested the exchange to implants will happen together to allow a better match.

If I go ahead with this option then there are more options of what I can do to look like I have nipples again. 3D areola tattoos, prosthetic 'stick on' nipples and I can even have flesh taken from elsewhere to make a nipple shape in place of those that I have lost that can be tattooed over too to give a realistic colour.

An example of customised nipple prosthesis.
Image: www.feelingwholeagain.com

2. Keep the nipple on the right breast
- this would leave me with 'odd' boobs and looking pretty much like I do now. One breast with a nipple and one without. I already know that this isn't the option for me, I want uniformity. I want to match both sides regardless of whether I have nipples or not.

3. Share the nipple
- this is something that I had actually read upon myself and decided to ask about. So, if I went ahead, I would keep my right nipple. It would remain in place after the mastectomy but at a later date (probably after the exchange surgery and during another day case under anaesthetic) my nipple would be split it in two and made in to two nipples. Half will remain on my right breast and the other transplanted and 'shared' on to the left side.

Keeping the nipple does leave me with a slight risk as there will still be a small amount of breast tissue that remains but given that my right breast is healthy, I am torn. There is a lot to think about. I just need to consider all of the options and do what is right for me.

Mr M explains that once Ive been approved my the psychologist he will go ahead an complete the operation for me. With regards to my nipple, I can just let him know my decision on the morning of the operation. I'm likely to be on the waiting list for 6 months to a year. Thank god I'm getting what I want finally!

FNA Results & Core Biopsy

After 9 agonising days, we fearfully head back to the hospital to hear the results. This time the waiting room is busy. It is filled with women and their 'support partners' - sisters, husbands, daughters. Again no one interacts. Everyone's heart pounding, hoping. We wait for 40 minutes. During that time my anxiety is through the roof, my tummy flutters and my heart is racing so fast I think it could explode.

"Leanne"

A nurse calls us. "Can I just check your date of birth?" I reel it off, my voice slightly broken by the fear. We are led in to the consultation room and sit down.

Mrs S, the specialist, shakes our hands. The results have come back. The FNA results were inconclusive but the swab from the bloody discharge has come back as 'suspicious'. I'll need to have a core biopsy. This is where a larger, hollow needle is used to take tissue - rather than just cells as in the FNA.

I'm advised that this can take place later on today if I have time to wait, the specialist again says she is convinced I just have a papilloma but because of the discharge she wants to investigate further. I head over to the coffee shop for an hour while we wait for my appointment.

I feel calm again. I'm not in the clear but at least I don't have to go away and wait for days again. I Google 'core biopsy' on my phone. I'll be given a local anesthetic this time so at least I won't feel anything.

An hour later I head back. I'm given a gown (it will not defeat me this time!) and I head to the changing room. Again there is another woman there waiting. I desperately want to speak to her, share my story, ask hers... but I cant. It's like my voice has gone.

Eventually Im called in to the ultrasound room - the same one as before. The curtain is pulled across and the nurse sent to the fridge to get the lidocaine. The radiologists asks me to remove my gown and lie on my right side with my left arm above my head. It's uncomfortable and I dread that I have to stay there... still... for a long period.

The local anaesthetic is injected in various places to numb the area. She apologies because the area is so close to my nipple and that is the most sensitive part. She keeps going around my breast but at one point she has to call for a superior to come in, one of the needles had gone in to the duct where the blood was and so a new aneasthetic needle was required.

The radiologist was really good at informing me what was happening at each stage however at the time there were so many needles that I thought that the biopsy had begun. Unfortunately that was only the anaesthetic! Eventually, I was numb and the actual biopsy could begin. A small cut was made in my skin and a big needle inserted. When the sample is being taken it's almost like a gun. There's a horrible loud noise and then the sample of tissue is grabbed. This was done 3 or 4 times over the course of hour appointment, with the senior radiologist was assisting and advising on how to best get to the areas that needed sampling. It wasn't pleasant but you just have to deal with it don't you.

After the biopsy the radiologist said "oh I forgot to tell you about this bit, I'm just going to put a titanium marker in place. Ok?" I was so traumatised from the biopsy itself that I didn't really have the chance to question it. I hated that it was just sprung upon me without any real detail and I had no time to think about it before it was done. It made me panic because in my head I felt as though they could see something bad and had to mark it up. I've since found out its so they know where they took the biopsy from so they can go back and remove anything nasty and locate it quickly

Afterwards a small dressing was applied where the incision had been made and I was sent home. The bumpy car journey was as awful as the last time and once the local anaesthetic had worn off it was really achey. Over the next few hours awful bruising began to appear. But for now life goes on, we just need to wait. Again.

First Time at the Breast Clinic

A few days later I received a call from the breast clinic and the date was booked. 17th October 7.00pm.

When the confirmation letter arrived it said that I could be at the hospital for a number of hours. They try to work on a 'one stop shop' basis where you see a consultant and have all necessary diagnostic tests in one go - a mammogram, an ultrasound and any biopsies.

I was so nervous heading in to the hospital. It was relatively quiet, probably due to the evening appointment time, but at 35 I was the youngest patient in there.

Eventually I was called into meet the specialist, I was relieved that it was a woman. Id been thinking about whether it would be quite a lot, I guess deep down I was thinking that a woman would understand the importance of femininity, what it meant to be a woman and just, well, know... you know? There was a nurse there too.

I sat down with my husband and explained my symptoms to her... the lump...the blood. I was then asked to remove all of my top half clothing and pop a gown on behind the curtain. The specialist examined the right 'good' breast first before moving on to the left. There was some dried blood on my nipple - evidence of something untoward. She tweeked my nipple to see if more came out - it did. The nurse passed over what looked like a clear glass slide - you know the type you would put stuff on at school before investigating under the microscope. It was put on top of my nipple and the dark brown blood smeared across it to be sent for testing. She feels the lump that I had felt and marks me with an 'X' with her black marker pen.

I keep the gown on, my clothes in a hospital plastic bag and I'm told to go and wait in a separate 'female only' waiting room. Apparently I am only having an ultrasound, a mammogram is not necessary. I sit down and stare at the TV in the waiting area. There is another woman there - we do not speak. It's almost as if we are gripped by fear and our voices gone. We smile but there are no words.

She's called first. I'm alone.

I get up to get a cup of water but the ties on my gown have somehow been caught on the arm of my chair. In some kind of slapstick comedy moment, my gown unties as I stand and I expose my whole top half. Thank god there is no one else here! I laugh to myself and that puts me at ease.

20 minutes later the door of the ultrasound room opens and I know I'm next. My heart rate starts to build again as I wait for my name to be called.

"Leanne"

I carefully stand, ensuring there is no gown/chair entrapment and walk through.

The room is dark, its divided by another curtain that blocks the door. I'm asked to remove the gown and lay down on the bed. The gel is squirted on to my breast, the screen turned out of eye shot and the scan begins. It's tense and I try to scan the radiologists face, eye movements, anything for clues. She tells me she can see something but it's likely just to be a harmless cyst. She want's to do an FNA (fine needle aspiration). This is where the radiologist uses a fine needle and syringe to take a sample of cells to be analysed under a microscope. I knew what this was and what to expect as my Dad had been through this during his diagnosis.

I'm wiped with a sterile wipe and using the scanner, the sonographer guides the needles in to the suspicious areas. As she inserts the needle in to my duct, the blood is released out in to her needle. She decides to drain as much of it as she can. I have no clues as to whether anything is spotted but it is over.

It hurts a little and my breast is really tender. I am told to get dressed again and go back to the original waiting area to see the specialist again.

We are asked back in. The specialist tells me she is convinced that my symptoms are being caused by an intraductal papilloma. They will send everything off and I'll be sent a further appointment to come back in for my results.

The car ride home was horrible. You don't realise how uneven and bumpy the roads are and how bad your suspension is until you are in pain.

Now I just need to wait. And hope.

So I found a lump...

Well 2017 has been traumatic to say the least. My Dad was diagnosed with cancer on 1st September and sadly just 8 weeks later on 1st November he was taken from us by this disgusting disease.

During Dad's illness and whilst my husband was away on a trip... I found a lump. That same day - Sunday 8th October -  I discovered that the spots of blood that had been appearing on my pyjama top for a few months had actually been coming from my nipple.

Panic.

The following day, on my mums birthday,  I called the doctors as soon as they opened and was offered a same day appointment with the nurse. The nurse felt my breast and said she would send me as an urgent referral to the breast clinic. She advised that I would receive an appointment within 2 weeks.

As I left the surgery, tears streamed down my face. I called my husband in Belgium and told him the news. He calmed me down and I headed off to work.

Unfortunately by the time I sat down at my desk my tears would not stop. I headed to the ladies to try and sort myself out but I just felt sick and couldn't catch my breath. I was sent home.

Waiting for the breast clinic appointment to come through felt like forever, although that was just the start of the seemingly constant wait for the 'next step'.